Due to the Coronavirus lockdown, majority of People with Hemophilia (PWH) are suffering in silence with severe pain by taking pain killers and homeopathic medicines prescribed by our doctors, informs Ramu Gadkar, Regional Chairperson Haemophilia Federation of India – Western Region.
How has the Coronavirus lockdown affected the supply of lifesaving, essential drugs for hemophilia patients?
These essential drugs come through courier via flight services from Hemophilia Federation of India (HFI), New Delhi and regional government day care centres. Since flight services are closed, the factors cannot reach us and the available stock is very limited.
Which essential anti-hemophilia drugs are in short supply?
Factor IX (helps the blood form clots to stop bleeding) is not available at any treatment centres in Maharashtra and Gujarat. FEIBA (Factor VIII Inhibitor Bypassing Agents) stock is very limited at few centres.
Hemophilia is of three types:
- Hemophilia A – deficiency of clotting Factor VIII
- Hemophilia B – deficiency of clotting Factor IX
- Hemophilia C – deficiency of clotting Factor XI
In India we have still seen only Hemophilia A and B patients. So they require Factor VIII and Factor IX respectively.
If patients develop inhibitors (Factor VIII and Factor IX antibodies develop), in that case patients requires FEIBA and NovoSeven, both are bypassing agents.
Which areas in the Western Region have been worst hit by the shortage of medicines?
The Western Region comprises the states of Maharashtra, Goa, Gujarat, Madhya Pradesh, and Chhattisgarh.
In Maharashtra and Gujarat Factor IX is not available at all.
In Chhattisgarh Factor IX is not available from government agencies but Hemophilia Federation of India (HFI) has supported with some stock for emergency.
How many hemophilia patients in the Western Region requre transfusion of clotting Factor VIII?
There are 6145 patients in the Western Region. About 72% require transfusion of clotting Factor VIII.
What complications can arise due to inadequate treatment?
There are multiple complications that can arise if Factors are not administered to the patient when required. There can be severe pain or joint damage which can lead to permanent disability if left untreated for long. In case of Intracranial (IC) and Gastrointestinal (GI) bleed, it can lead to death if not treated on time.
Could you give us instances of how patients are suffering, or even endangering their lives, due to unavailability of drugs?
The majority of People with Hemophilia (PWH) are suffering in silence with severe pain by taking pain killers and homeopathic medicines prescribed by our doctors. Only in emergency situation, the PWH are venturing out to treatment centres.
How are patients managing without their regular supply of essential drugs?
They have been advised to follow the P.R.I.C.E regimen, an essential part of treating acute bleeds. P.R.I.C.E stands for –
- P- Protection
- R- Rest
- I - Ice
- C-Compression
- E- Elevation.
Has there been a shortage in the past?
There have been irregular supplies because of disruption in tendering process formalities by the Health Department.
How do you think officials can ensure regular supply of anti-hemophilia drugs in future?
Timely tendering process, budgetary provision every year as number of patients increase every year.
What advice is being given to hemophilia patients during the Covid-19 lockdown?
To follow guidelines provided by Dr.Kanjaksha Ghosh, ex-President Hemophilia Federation (India) and ex-Director, ICMR (Indian Council of Medical Research). I highlight some of them here.
- Stay at home.
- Do warm saline gargle 2-3 times a day.
- Wash hand with soap at least twice if coming from outside.
- Use your Factor concentrate as and when required. However, as there could be difficulty in procuring concentrates, be extremely careful not to hurt yourself.
- Central Council of Homeopathy research has advised to take Arsenic Alb30, 4-6 globules by mouth once in the morning for consecutive 3 days in a month to mitigate flu-like illnesses.
- If you develop dry cough, fever, sore throat and loss of smell, contact the government Covid-19 numbers.
- Mild exercise and healthy nutritious diet.
